Major Report on Public Health Dimensions of Epilepsy Commissioned
The Institute of Medicine: Next public hearing June 28th-29th

Click here for more information: www.iom.edu/Activities/Disease/Epilepsy.aspx

CURE Chair Susan Axelrod’s testimony at the January 10, 2011 Institute of Medicine’s “The Public Health Dimensions of the Epilepsies” public hearing.

This is an awesome responsibility, to speak on behalf of so many patients and loved ones who are desperate for answers to the multi-faceted, complex challenges of epilepsy.

So much work still needs to be done in order to fully understand and treat the whole patient. More often than not, the co-morbidities that so frequently plague our loved ones have an enormous adverse effect on overall health and quality of life—to say nothing of their emotional and financial burden. These other conditions—that can be psychiatric, neuropsychological, neurological, medical, physical or social—require treatment, but are rarely addressed.

My daughter will be 30 this year. The day before her seizures began, at 7 months old, she was a healthy, normally developing child.

Her seizures were refractory from the beginning, as were so many of the other challenges that emerged over the coming years. The more persistent the seizures, the more burdensome and complex those other challenges were—becoming often as debilitating and devastating as the relentless seizures.

Cognition, language, mood, gross and fine motor skills—none were left unscathed. Consequently, even though she’s been seizure-free now for over ten years, she is incapable of living independently.

Tragically, the questions we asked as we watched this all unfold remain unanswerable even today. Did an underlying condition cause both the seizures and the co-morbidities, or were the seizures wreaking havoc with her developing brain?

How much could we attribute to medications?  Was it possible that sub-clinical seizures were causing her erratic behaviors, her periodic bouts with psychosis, or her violent rage attacks?

It fell totally upon us to try to coordinate her medical care with all the therapies and interventions aimed at helping her reach her full potential.  The goal of a comprehensive, coordinated, multi-disciplinary approach—including patient and family education and support—was elusive then, and still is today for most families. Even for those who have the luxury of insurance, resources, and a decent school system.

Preparing for today, I was struck by the vast array of challenges my fellow committee members have shared.  Together with representatives from the American Epilepsy Society, Epilepsy Foundation, FACES, Hope for HH, ICE, IDEA League, ILAE, LGS Foundation and TS Alliance, we’ve submitted a written supplement to this testimony for your reference, including an exhaustive listing of what so many patients and families endure.

Perhaps the most profound fear we all share is the possibility of losing our loved one.  For me, with every hospitalization, and there were dozens, I became less confident we could stop Lauren’s life-threatening seizures. At home, for 21 years, we monitored every bath or shower, leapt into action with every abrupt noise, and slept with a nursery monitor by our heads every single night. We are all haunted by the notion that each seizure could end a life, and by our fear of the poorly understood phenomenon of sudden unexplained death. In light of last month’s article in the New England Journal of Medicine, which is included in your materials, it is clear these fears are well founded.

The healing that has occurred in Lauren’s now seizure-free brain, is remarkable. And so, it is my belief that the ultimate goal of our community and all public efforts must always be complete and total cessation of seizures for all. Nothing less.

But, until then, we urge this Committee to help patients, families and society understand and cope with the full impact of epilepsy – and not only in children, but in patients across all age groups, including seniors.

Accurate identification and enhanced attention to co-morbidities is critical to helping patients access coordinated care, instead of isolated treatments by numerous providers, which, in the long run, can potentially do more harm than good. We must increase the medical community and other caretakers' sensitivities to these burdensome issues, and promote partnerships between individuals with epilepsy, their families, health care providers, caretakers, educators and employers.
Increasing attention, surveillance and treatment efforts will enhance our understanding of the full scope of epilepsy and associated co-morbidities, point to new directions for research, and, ultimately, provide answers to the many questions about epilepsy and the brain which have plagued mankind for millenniums.

And, please don’t forget, as this work proceeds, that seizures affect far more people beyond those who we typically think of has having epilepsy. Many with traumatic brain injury, autism, stroke, tumors, cerebral palsy, multiple sclerosis, tuberous sclerosis, downs syndrome and more, also struggle with these complex issues, and face the same challenges in both understanding and treatment. 

It’s truly been an honor to appear before this esteemed committee, and so many valued public representatives.  I hope I’ve conveyed even a modicum of the burden that epilepsy, and it’s co-morbidities, places on patients and their loved ones. The problem we call epilepsy is immense—it is a serious, life-altering and life-threatening public health concern. You have the power to examine all it’s complexities, and begin our path toward effecting true, substantive changes in care, treatment and the search for cures.

It is an even greater honor, now to introduce you to two very special people who I am so proud to know: Captain Pat Horan and his wife, Patty.

In 2007, Captain Horan sustained a gunshot wound to his left temporal lobe while on a night mission in Baghdad.

Four months later, after several brain surgeries, Pat suffered a status seizure.  Dilantin was given to stop that episode and several other anticonvulsants were introduced.

Over two years now Pat has had eleven grand mal seizures, some requiring hospitalization. Each time he gained momentum with his rehabilitation, a seizure would put him right back where he had started—unable to walk, speak or use his arm for days—sometimes weeks. The medication kept him in a perpetual fog, making therapy even more difficult.

Pat’s last seizure was in April. He is still on large doses of medication that make him tired and, at times, angry, aggressive, and sensitive to over-stimulation. Each seizure puts him through a period of complete despair. Patty wrote: “I worry every time I see a funny look in his eyes, hear a strange noise come out of his mouth or a thud down the hall. I’m afraid to travel too far from home for fear of an emergency, and don’t feel comfortable leaving him alone for more than a few hours at a time. I worry about what all this medication will do to him over time. We’ve both lost much of our freedom because of Epilepsy.”

Living with epilepsy requires a tremendous amount of courage—every day, every moment. Talking publicly about it takes even more. Pat and Patty, thank you for all you have done, and all you continue to do to make a difference for so many individuals and their families who are struggling with epilepsy and its consequences.

Please join me in recognizing Pat and Patty’s heroism in service to our country, and for their continued heroism in service to this cause.